Personal and emotional impact of early menopause on women: Health Practitioners’ perspectives

A diagnosis of spontaneous or medically-induced early menopause (EM) or premature ovarian insufficiency (POI) (see Delivery of diagnosis and emotional impact of early menopause), and the symptoms (see Symptoms of early menopause) and treatments for EM/POI impact on other areas of women’s lives. The health practitioners we interviewed discussed the personal and emotional impacts that EM can have on women, including relationships, fertility, sexuality, body image, mental health and wellbeing, and cognition. The impact of EM/POI varies between women depending on her age, cause of menopause and other co-existing heath issues.

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All the evidence we have shows that losing your oestrogen supply before the age of 40 drastically affects your wellbeing. Obviously, it affects your reproductive capacity but it also affects your cardiovascular health, your bone health, your mental health, and your risk of dying early. So it’s not a normal physiological event.

And the other issues are your emotional health, and the emotional health is really one of the most important of all.

General practitioner Dr Ee described how, in her experience, the emotional impact of EM and ‘natural’ menopause can be similar.

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I think a lot of women who go through the menopause are adapting to the change in life in general so it’s not – I guess it’s not necessarily specific to women with early menopause. I think all women, when you talk about the menopause with them, it’s a real milestone for them, you know, it’s the end of an era, I think, that you have to work through with them and see how they feel and some are relieved and some find it really difficult, yeah, and I guess it’s a perception as well of being feminine too. I think there is a feeling that there’s a loss of that sometimes with some women.

Impact of EM on personal life

The impact of EM on women’s personal life can differ according to the cause of EM; whether it is spontaneous EM, or EM following cancer or medical treatment. For example, Dr P, a breast surgeon, commented that women who have an identified BRCA 1 or 2 gene mutation and undergo a risk reducing oophorectomy can be ‘euphoric’ because ‘many of them have been discussing having their ovaries out for the preceding decade’. However, medical oncologist Dr S remarked that EM is ‘an under-recognised and under-appreciated terrible symptom of cancer treatment’ and could be challenging for women to adjust to.

Health practitioners observed that the emotional impact of EM also depends on what supports women have in their personal life, their age, whether they had wanted children or have completed their families, and prior knowledge of EM. Dr C, an obstetrician-gynaecologist, said that in cases of ‘very early onset ovarian failure, there’s a lot of emotional impact on [women] and their families,’ particularly in relation to fertility (see Fertility and early menopause).

Endocrinologist Dr D discussed how the emotional impact of EM can vary between women, and depends on whether they have prior knowledge of EM.

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It really depends on the personality of the woman, her psychology, her supports, if she’s single, where she’s at. It will really depend. Some are grieving for loss of what they expected I think, or an unwanted diagnosis. Some are grieving for their future. Some will definitely be very upset about fertility prospects.

I think most are upset that they didn’t know it was coming, and they didn’t expect it, and it wasn’t something on their radar. Some are really knowledgeable, and “Oh mum had a menopause at 40 and I thought this might happen to me too.” Some almost expect it and are not worried about it – it will really depend on psychology and where they are at and what they expected and what their wishes for the future were.

When women are diagnosed with EM, they may feel ‘out of sync’ with friends and family members of similar ages and can find it difficult talking about their experiences. Dr Goeltom, a general practitioner, commented that women may experience a ‘psychological burden’ when diagnosed with EM (see Psychological therapies and support for early menopause): ‘You know you are different … [you think to yourself,] ‘Other women still have everything working, and not me’.’

Health practitioners observed that potential emotional impacts of EM include feelings of loss around youth, femininity, and/or fertility (see Fertility and early menopause). For Dr G, a clinical psychologist, those impacts are interconnected: ‘Women may have concerns around feelings of loss … questions around fertility and the plans that they had regarding a family… women talk about feeling a loss of their femininity, a loss of a feeling of youthfulness. A lot of women talk about feeling that they aged as a result of their early menopause’.

For Dr W, an endocrinologist, a general lack of awareness and understanding of EM can cause ‘stigma’ and body image issues, and make it difficult for women with EM to share their experiences.

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I think there’s a lot of beliefs out there like that and it’s a bit stigmatised in that way.

It’s the getting old, you know, ‘Oh, you’re going to be a shrivelled up old prune or something and not sexy,’ and all that sort of stuff. So – and there’s all the grief and – they’re very personal issues as well; grief around not being able to have children is a very personal thing that you might not necessarily want to divulge to everybody. And if you – you might worry that if you’ve got menopause and tell people you’ve got menopause they know and then it’s – I don’t know. I think it’s a very difficult issue.

Yeah. Absolutely. And if you’re a younger woman you’re likely to have friends who are having children.

Yes, I think that’s really hard as well, when everybody’s having kids.

Cognitive difficulties and impact on work

Several practitioners noted that women may report difficulties with concentration, memory and other aspects of cognition, which can be very distressing, especially if their work is also affected. However, it is difficult to say whether this is due to the EM/POI itself, the impact of menopausal symptoms on mood and sleep, the effects of treatments such as chemotherapy, or other factors.

Dr G, a clinical psychologist, shared her experience of working with women after chemotherapy, and discussed how cognitive difficulties can impact on women’s ability to work.

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It’s a very prominent issue and of course it’s particularly prominent with my patients because they’ve gone through chemotherapy as well and so if they’ve gone through chemotherapy, they all talk about their chemo brain there’s some acceptance around that. They are prepared for that they’re not going to be able to concentrate as well as they could or they might be more forgetful and yeah, if they’re having chemotherapy, there’s an explanation for it and so women tend to be a bit more okay with it, seeing that as a temporary thing.

But after finishing chemotherapy, if that continues on or if women have gone through early menopause and the cognitive difficulties are still persisting, it’s very, very hard to accept, and these are women who will come in and say, “I’m the one who always knew where everything was and now I’m not. I don’t know where everything is. I’m having to use a diary. I never used to have to use a diary before. I’m having to write things down. I’m having to write lists. I now have lists of all my lists”, you know. It’s very difficult for them.

For women who are in a high-powered position where they have to be very, very focused, it’s a source of great concern for them and for women – even for women who are not working in such mentally taxing positions, often they get very embarrassed. They feel in conversations that they’re repeating themselves or they are forgetting things. They forget names. So yeah, it is an issue.

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For women who have been diagnosed with cancer, I think it’s particularly, you know, there’s a secondary layer on their concerns because they’re quite often in a difficult position whereby very well-meaning friends, relatives, partners, even some medical professionals will be saying to them, you know, “That’s menopause. That’s the least of your worries. You’ve got this other thing that you need to focus on right now.” Well, for women who’ve come to me about this is their concern, it’s not the least of their worries at all. It’s a very significant concern. So to have it minimised can make women feel quite alone in their struggles. So a lot of them talk about not feeling that people understand what they’re going through.

Ms Hay, a breast care nurse, described how during cancer treatment, some women need more support because of the combined impacts of EM and the treatment.

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I would certainly endeavour to remain in contact with patients when they go on to endocrine therapy even though you know their active treatment has finished because it’s at that point when they, all of the regular contact with other health care professionals has stopped, which they quite often find quite reassuring and they feel very alone and I think they start to question themselves a little bit so it’s really important to have that regular contact and particularly when they first start endocrine therapy we can see a lot of obviously hormonal changes and it’s at that point that they start to get emotional and get quite confused and it’s out of their control but I think it’s a combination of “I’ve finished treatment why aren’t I, why aren’t I feeling happy and elated and moving on with my life?” but it’s all of the chemical imbalance happening in the body as well and they just need that little bit of reassurance and few strategies along the way.

Yeah so how often do you see them then through that period?

So that’s determined by the individual, so in the early phase, I’d certainly, on average probably see a patient about eight times, into survivorship that just depends on how the patient goes, because the last thing that they want if they’re doing okay is me constantly contacting them as a reminder of their past and what they’ve been through so I quite often put the ball in the court and say, “Look we’re always here, you know where I am if you need me, just because you don’t hear from regularly, it doesn’t mean that I don’t care or I’m not thinking of you,” but it’s about empowering that woman to make those decisions and be in contact when they need, so.

Yeah okay so yeah once they are on the endocrine therapy, who, if they’re struggling with menopausal symptoms, who would they be seeing?

The GP generally more often than not and calling myself but I guess there’s non-pharmacological management avenues that we would pursue before we would refer to the GP for pharmacological management so you know that might entail them popping in and having a discussion with myself for an hour about what they could be doing and it might be simple things like cutting out caffeine, well not cutting out, maybe reducing it, cotton clothing, fans at night, cool showers before bedtime all of those sort of universal things.

Impact of EM on intimacy

Health practitioners commented that women with EM may often experience difficulties in their sexual relationships. This may be due to the effects of EM, the effects of treatments (e.g. aromatase inhibitors or chemotherapy), issues related to body image, psychological distress and/or relationships (see Intimacy, sex and dating after early menopause (women’s experiences)).

Dr Goeltom, a general practitioner, shared her experience of discussing sexuality and relationships with her patients.

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If they have, they tell you, “Yeah, my libido is gone.” That’s opened the door for you to start talking about it. It’s hard to just ask them, “Do you have a libido or not?” And then the other hardest things after that is for you to try to look at is this related to just simply physical things, hormonal things, or is there anything…

Psychologically, they don’t feel good; they feel ageing. So is it psychologically? Could it also be the relationship issue? There is also, of course, you know, social, economical issue. It’s all involved in there you know, patient can open up to you, and then you try to explore it, and then see. The role, if I go back to your question, the role of the partner is very important, that they don’t look at the woman, or the partner, when they’re ageing, it’s not a sexual being any longer. You know?

So it’s important to be able… That everyone grow old together, you know, so sex is just part of it. There is lots of happiness or creating moods without having to have sex. There is a lot of those kind of things. So I like seeing the lady with the male, in particular with a partner, if they have issues. Some of the men actually [text removed] They’re scared that it becomes painful for you, because before it was painful, you know? It’s almost like a fragile woman, now, in front of them. So you need to try to explain to them, also, that it is not like that.

Several health practitioners explained that impact of EM on sexuality was an important topic to raise with women experiencing EM induced by cancer treatment because, as Dr G noted, ‘after cancer treatment, bodies change, and so what used to feel good in the past might not feel good now.’ Women may also find it difficult to talk about sexual function or vaginal or urinary symptoms with their health practitioner (see other resources below).

A breast surgeon, Dr P, emphasised the importance of building trust with patients to talk with them about the impact of EM on sexuality following cancer treatment.

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Yeah, they do talk to us. Yeah, and I think because you know them they are more likely, particularly the sexual dysfunction which they feel uncomfortable talking to, perhaps to someone that they, you know, they do meet the medical oncologist but then they may meet the Fellow or the Registrar who have a tendency to change, whereas the surgeon often remains constant.

And so they after a little while they do feel comfortable to say, “Actually we have significant sexual dysfunction,” and many people don’t recognise that’s an actual side effect of us having made them menopausal and the reasons why. And we can actually do things to improve that situation and certainly filter back to their oncologist, “This is – this is what this woman’s experiencing.” And for many people who are young, you know, part of their – their – their self-worth in a way is their sexuality and their relationship with their partner or other young people in that way and I think we are not addressing that particularly well.

You know, they don’t talk about it easily and I think clinicians also often feel uncomfortable – uncomfortable talking about it. It’s very private, you’ve opened the window into a lot of their life, you know these people very well. You know, it’s almost the last sort of – last sort of bastion, is their – is their sexuality and their relationship with their most intimate person and – and you don’t really want to go there, but probably we should be trying to go there a little bit more.